Unpacking the emotional layers of transplant: guilt, gratitude, and grief

This week, while my husband, Jonny, and I sat at home in isolation after our tests for COVID-19 were positive, I struggled to feel joy. My friend sent me a video of someone singing a popular emo anthem while holding a wet strawberry — its soggy leaves pasted to its bright red skin in a way that resembled the hairstyles of many of my millennial peers circa 2004. I have never related more to a piece of fruit.

The angst expressed in emo music — an emotional genre that came after hardcore punk and was the soundtrack for my pubescent years — still lives within me. And there’s nothing like being stuck at home with an infectious disease to bring angst to the surface.

When I was brainstorming for this column, my cheeky husband suggested that I “write about my feelings” (as if I could do anything else). I was surprised that instead of angst, sadness and guilt washed over me when I stopped to pay attention. Angst is a great shield for feelings we don’t want to feel.

I’ve been at this column writing business for almost four years now. I’ve investigated and processed a lot of traumatic and incredible experiences from the lung transplant journey of my mom, Holly, who had idiopathic pulmonary fibrosis. But something that never seems to be fully processed, has never earned the seal of closure, is the complex grief I feel for my mom’s donor.

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Even as a caregiver, I have complicated feelings about my mom’s new organs. First and foremost, there is gratitude. But solid organs don’t come from nowhere. My mom received new lungs because someone died.

As my family celebrated my mom’s rebirth, her second chance at life, somewhere in the same hospital, another family said goodbye to someone they loved. I’ve been in their shoes, too. The ache may be soothed by the knowledge that a loved one’s body has helped others live, but it doesn’t right the wrong of loss.

And on the receiving end, it doesn’t always work perfectly, either. My mom’s medical team made us aware of so many ways that things could go wrong. We knew the risks, yet my mom decided that she’d get a lung transplant or die trying.

We approached my mom’s transplant with cautious optimism, and we got lucky. It’s important for me to acknowledge the privilege my family has: Despite some setbacks, her transplant was successful, and she’s enjoyed health and longevity because of her new lungs.

Not everyone can say that. I know people whose transplants have gone sideways, and they ended up on the other side of them still sick — or worse, sicker than before. These stories are out there. Many of them are even right here on our sister sites, Pulmonary Hypertension News and Cystic Fibrosis News Today.

The podcast “Terrible, Thanks For Asking” has an episode titled “YOLO?” about Leilani, a woman who “died” four times before receiving a heart transplant at 24 to treat her hypertrophic cardiomyopathy. Unfortunately, she ended up with another faulty heart. She’s experienced cardiac arrest and been resuscitated twice since her transplant.

She talks about her struggles to accept her new heart and trust her medical team. She grieves the person she was before the transplant — and the person she hoped she’d become after her transplant, but didn’t. She searches for answers that will never come. She wonders about her donor, about her life, but says, “It’s too hard to grieve me and someone else at the same time.”

My heart is with Leilani, and people like her who have the added emotional burden of a poor outcome from transplant. Even for people who have the best possible outcome, tending to grief and guilt will be a part of their process.

Every year on her transplant anniversary, my mom writes a letter to her donor’s family. They’ve never written back, which we understand and respect. Maybe someday we will learn more about her, but for now, all we know is that my mom’s donor was a woman who was about my age.

We only recently learned this news, and when I heard, I felt this queer mix of awe and heartbreak. My grief was made anew, imagining what the donor might’ve been like. I have more questions than ever. Like, how did this happen? Healthy young people aren’t supposed to die. And then, how can I feel that when her death gave my mom her life? I’m so grateful for her gift and simultaneously outraged that she died.

Guilt. Gratitude. Grief. I want to bring the angst shield back, but the whole gang’s here now. What a mess.

I grieve for her because I love her, even though I don’t even know her name. I can only try to imagine how my mom feels. The bond we have with my mom’s donor is precious and unique. We’re a part of her legacy, and I hope we make her proud.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.